What did I know about developmental disabilities (DD)—then mental retardation—in 1986? Nothing. I didn’t give people with DD a second thought. They were in the peripheral of day to day in my daily encounters.

It was not like they were invisible, though. Across First Street, our kitty-corner neighbor’s adult son who lived at home had “something.” I didn’t know what and I didn’t care. I just knew his bike was bigger than mine and I wanted to ride it. He let me. I crashed. Then the girl who was riding right behind me ran over my nose. Ironic?

Fast forward a through a transient life of sports, nightlife, and Aspen to marriage, pregnancy, and the first of two alpha-fetoprotein tests. The first came back abnormal. I pulled out my giant book of baby information and looked up the implications: Down syndrome. I flipped back and forth through the large pages of the book, familiarizing myself with the disability through watery vision. The second test came back normal. Even so, the experience foreshadowed my initiation into Requiem for Normal.

I put it out of my mind. Healthy thoughts, healthy baby…until the six month well baby check-up. All was not well. I pulled my head up out of the sand.

At first I saw only glimpses of disability, still not looking it wholly in the small eyes, low brow, developmentally delayed face. But neurologists and therapists and hospitals and IFSPs and IEPs have a way of prying open your eyes, even without a diagnosis. I didn’t blink. I kept them open and stared right back at awareness.

Would I have been mindful of people with developmental disabilities were it not for full immersion?

I seriously doubt it. I am not the guardian angel type. I am not like the many we have met through these years in my awareness journey—guardian angels masquerading as ordinary people, people who spend their time, their education, their mental and physical resources caring for my now twenty-seven year old daughter. I am nothing special. I am middle-of-the road, Midwestern, Jane Doe average. It is my daughter who is special, who is brave, trusting, and deserves to be seen.

I acknowledge that Everybody’s Got Something. I only ask that you are better and bigger than I was and lift your head from your own challenges to see without staring who people with developmental disabilities really are: friends, family, patients, students, teachers, neighbors, employees.

People with a developmental disability (DD) need a champion, an iconic figure that encompasses public perception, one that transcends time and political isles: consider the Scarecrow from The Wizard of Oz.

Throughout history people with developmental disabilities have aligned with the Scarecrow. They’ve been perceived as inferior, sub-human, and subject to inhumane treatment, including tied to a stake—although not for utilitarian crop-protection purposes, but to be burned. A chronology from Teaching for Diversity and Social Justice by Adams, Bell, and Griffin records that through to the 1700s people with DD in many countries were considered evil, possessed. Public policy at the time was torture, burn, or leave to die.

Toward the Age of Enlightenment attitudes and policies shifted slightly. People with DD in the United States had a champion and were upgraded from evil to defective. They had an advocate in Dr. Samuel Gridley Howe, who appropriated money from the Massachusetts legislature in 1848 to teach “idiotic children.” He later founded the Massachusetts School for Idiotic and Feeble-Minded Youth in 1850, believing in their ability to learn.

While Howe did pioneer educational change, he was no Scarecrow—he was not on the receiving side of the fence. He could go only so far in the face of flying monkeys. These monkeys, including the Nazi regime, practiced methods deemed appropriate for people classified as “defective.” Yet Germany was not the only country who targeted them for sterilization and euthanasia. They may have been the biggest monkeys, but they were followers not leaders in this movement.

The National Eugenics Office, a center of human traits and genetic study, presented their study in February, 1914: “Committee to Study and to Report on the Best Practical Means of Cutting Off the Defective Germ-Plasm in the American Population.” They investigated “all phases of the problem of cutting off the supply of defectives.” They listed “Classifications of the Socially Unfit.” People with DD, identified as The Feeble-minded Class, were first on the list and determined by the committee to be idiots and imbeciles and the “greatest of all eugenical problems.”

Hitler was inspired.

Nazi rule passed German Law for the Prevention of Genetically Diseased Offspring in 1933, implementing sterilization. In the Adams et al. chronology, by 1939—when MGM produced The Wizard of Oz—Hitler was lockstep with 45% of the U.S. who believed in euthanasia for “defective” infants and began Germany’s Euthanasia Program on people with DD, the guinea pigs for selective race:

70,000 adults and 5,000 children put to death during the official phase and over 200,000 killed in total. Children were killed with morphine injections, gassed with cyanide or chemical warfare agents. They were also slowly administered poisons, starved to death, and exposed to cold so that the deaths would appear “natural.”

The United States Holocaust Memorial Museum further describes the transition from elimination of the “unfit” toward racial genocide: “The most extreme measure, the Euthanasia Program, was in itself a rehearsal for Nazi Germany’s broader genocidal policies.”

Edwin Black in his book, “War Against the Weak: Eugenics and America’s Campaign to Create a Master Race,” writes the “lethal chamber” was the “most commonly suggested method of eugenicide.” He also notes doctors and institutions opted out of “organized lethal solutions,” operating in favor of covert techniques such as giving institutionalized patients milk from tubercular cows and other death-by-natural-looking-cause methods.

Neurologist Foster Kennedy encouraged elimination of the “hopelessly unfit.” Under the spell of the Wicked Witch of the West, Kennedy published an article in the American Journal of Psychiatry in 1942, promoting euthanasia of the “feebleminded” as a mercy killings: “Here we may most kindly kill, and have no fear of error.”

Then from 1954 to 1960, legislation journeyed down the civil rights road, beginning with Brown v. Board of Education and Social Security Amendments. A storm was brewing.

The White House fell in on the witch in 1961 and out stepped John F. Kennedy. JFK implemented the President’s Panel on Mental Retardation—a beginning that fundamentally challenged the institutional status quo. The world up to this point had never seen an advocate for people with developmental disabilities like JFK. He was intimately familiar with the challenges and the abilities of people with DD. For him there was “no place like home,” and home, community, is where he believed all people belonged.

Since JFK’s time there have been individuals and parent lead grassroots efforts and groups such as The Arc who have been instrumental in systemic change—hard fought battles against public perception and public policy. There have been heroes of specific diagnosis like Temple Grandin for Autism. Still, as sympathetic as JFK was, there has never been a universally accepted champion, an empathetic one that embodied the misjudged, mistreated, mistaken essence of people with developmental disabilities like the Scarecrow.

Certainly times have changed for the better. Labels have transcended with perception and treatment from evil to idiotic to defective to retards to entitled. People with DD and their caregivers are now much less victims of institutions than they are of bureaucracy, budget cuts, and political warfare: Individual with Disabilities Education Act (IDEA) noncompliance battles; health and economic losses on unsupported family caregivers; 300,000 eligible people with DD on waitlists for Medicaid services with vague wait times of five to twenty years.

People with DD are eclipsed in the Medicaid conversations, a subgroup yet again. According advocacy nonprofit organizations like The Arc, people with developmental disabilities are “still in the shadows.” Sprout films about and by people with DD dedicate their mission to “making the invisible visible.” Meanwhile, mega-profit corporation COKE prints “you retard” on their product caps and selectively excludes this minority in their “diversity” commercial.

People with developmental disabilities need a high-profile champion. They need a recognized celebrity like Michael J. Fox for Parkinson’s and Elizabeth Taylor for AIDS. They need a nonpartisan pilot of their balloon: the Scarecrow. They also need Professor Marvel to reach in his little black bag and give congress a brain, courage, and a heart so that the elected power-that-be eliminate the Medicaid Home and Community Base Services (HCBS) waiting lists.

People with developmental disabilities need a voice that will be heard, seen, and respected. After all they have been through, they deserve it.

No matter how many commonalities caregivers have, in the early hours of the day or the late hours of the night when your loved ones need bathed, fed, dressed, toileted, calmed, cared for, you are pretty much alone. When they need help getting to the doctor, going through the bills, taking medication, you’ve been pretty much by yourself. I know. I was there for nineteen years.

Even though Caregiver Action Network statistics show “More than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year,” as indicated in a 2009 report, a Caregiver.com article by Kathy Bosworth notes that the majority of caregivers are “going it alone.”

That means we’re it—unless we find, ask, or pull assistance instead of a rabbit out of Professor Marvel’s hat.

My assistance came in the form of Development Homes, a group home in North Dakota. Katie and I jumped into the tornado of change, left husband/father back in Colorado, and landed in Midwest-land, otherwise known as Grand Forks. My good witch of the north wasn’t Glinda, it was Tanya—Katie’s nurse at Development Homes, someone who took Katie’s health and best interest under her wings.

Transitioning from living at home to living in a group home for Katie was an adventure. It was more interesting, more stimulating, more consistent in medical care. It was a horse of a different color and she began to thrive—slept through the night, fewer doctor’s visits, and more magical mastering of day to day challenges.

I broke out in hives.

Trusting others with the care of a loved one is scarier than a pack of flying monkeys, whether it’s for an evening, a weekend, or longer. The emerald lining, for me, was that I went from primary caregiver to being part of a team of caregivers. Still, the very idea of sharing the care in of itself can sound insurmountable.

It seems like more work than it’s worth—additional stress. There is one obstacle in particular that I had, and have heard from others, that keep us from reaching out: Who.

Who do you trust? Nobody can do this as well as you, right? Valid statement. But since cloning is out, for now the best solution is training.

I am swimming, skimming the jeweled plane of the ocean with indifference toward what lies beneath. My arms reach and pull and lift against the dense drag of salty resistance. Alternately, my hands drip glistening beads of water, arc into the air, and submerge again stroking, stroking forward. With firm hip and level knee, I kick—an unconscious rhythm propelling me until my fingers brush against something below the surface. It is leathery, like the belly of a shark.

My heart races. I draw my knees into my chest and glance toward shore. It is dry and distant and I am far out in the heaving womb of the sea. There is no where to run.

I plunge my face underwater to meet the future head-first. My eyes prickle when I open them up to a world I can survive in only beyond one breath of my fantasies. The aqua marine world fades into midnight dreamscape. I scan this saturated horizon, spinning slowly. No jaws, no fins, no twelve-foot predators stalk me from the deep. It is oddly peaceful. Then in the din of sandy distance, I glimpse her.

She’s bewitching and strangely familiar. I squint past the conventional schools of trumpet fish and herds of sea horses into unthinkable. She appears an inhabitant of a mythical world where Neptune’s children wear oyster pearls about their wrists and curl up near the roots of seaweed. I am captivated, unable to turn away. I cannot help but follow her deeper into the depths to see her more closely.

She turns to me as a sunken shaft of sunlight illuminates her form.

She is amphibian in nature, kindred to a human. Her eyes look into mine with a gaze both indistinct and intimate. She begins to sing a melody my ear regards—one that taps a note of awakening in my blood, a music without lyrics, a siren’s tune that echoes through the tides and implants itself within my gut. I am rapt. Suddenly, realization stings me like a jelly fish. I know her.

Stale inhalation burns my lungs. I exhale, choke, gulp in lungfuls of gritty water. I need air. Bubbles race me to the surface. I flail about coughing, searching for a life preserver. She cannot be my fate. I want “normal,” I cry out. Save me from a life beneath its surface.

Hers is not the kind of life a mother seeks–it is one that finds.

To be severed from the firm predictability land offers to live with her comes at first with a queasy sense of disorientation, of loss. But flesh is flesh, so I grow scales. I become a mermaid, learn to breathe underwater, and realize that normal is the anomaly. I found the sunken treasure, turned the skeleton key, and discovered that Everybody’s Got Something.

A boat nor a fisherman need not rescue me from my future. I willingly kick my tail and follow my child adorned with special needs into the murky unknown, because she is my rib and I am hers.

Katie does not have the luxury of a label. She has a “group of conditions” with “not otherwise specified” or “pervasive and profound developmental disorder” characteristics. Try putting a label on that. Even the labeling Powers That Be in government and advocacy are inconsistent in their official terminology. They are at different evolutionary levels: Mental Retardation; Developmental Disabilities (DD); Intellectual/Developmental Disabilities.

undiagnosed

Neither does Katie have distinct physical characteristics related to a label—children with Down Syndrome have recognizable facial features and look like they are part of one big family. And she is not included in a .org support community like Children with Autism, Down Syndrome, Fragile X, Prader –Willi Syndrome, or Angelman Syndrome. There is not a publicly recognized, organized movement with colored puzzle pieces, millions of followers on Facebook, and celebrity driven fundraisers or awareness walks for people who have an unspecified developmental disability.

The label that comes to mind most quickly for the general public is antiquated, inaccurate, and derogatory: retarded. One word labels are easier to digest. They are snapshots, blinks, for people who are not immersed in the culture.

When Katie was little I wanted to know what community she fit into. So we left our round (kitchen) table and went on the Quest for the Holy Label. After years of geneticists and lab tests and examinations we still had a group of conditions without a name. The only label we had was one they needed for education and insurance coding: profound developmental disabilities.

Now, I will tell you that not knowing a name for your child’s challenges, their Something, can create blissful ignorance. No one tells you your infant’s likelihood of a lifetime of limited capabilities: will always wear diapers; need someone to dress her, feed her, bath her; will never learn to read, or speak, say “goodnight” or “what’s for supper” or “can I borrow the car” (yeah, we can probably all live without that last one).

Katie is now an adult. In our Quest for the Holy Label we learned that she doesn’t need a label. Her challenges–moderate, profound, or unspecified—are simply part of being Katie, they are characteristics, like her curly dark hair and infectious smile